“This is my friend…” Elizabeth pauses and begins again. “This is my friend…”
“Pat,” I say, providing my name for the receptionist at the memory care residence. Elizabeth smiles and repeats my name, her gracious introduction now completed.
Elizabeth has Alzheimer’s disease. At 68, she is the youngest person living at the residence.
We are old friends, the kind Simon and Garfunkel sang about in their poignant song with that title. Elizabeth (not her real name) was maid of honor at my wedding and we have been close since junior high. As an adult, she worked as a teacher and later, a lay chaplain. Elizabeth was an accomplished seamstress and quilter, a terrific cook and a wise and generous person with a warm sense of humor.
Sadly, the past tense fits, though Elizabeth is still alive. Two years ago, she called me — for six years we have lived half a continent apart — to tell me about the diagnosis. “I have Alzheimer’s,” she blurted.
As teens, we spent untold hours together, wondering when our real lives would begin, when we would be happy, whether we would find love.
We both cried. When I asked what happens next, she said she wasn’t sure. The doctor had prescribed medication to help slow the disease. “I don’t know what to expect, but there is no cure,” she said. I told her I loved her and then we cried some more.
Recognizing Early Signs of Alzheimer’s
Before Elizabeth said those chilling words, I knew about the diagnosis. A week earlier, one of her sisters had told me. I had suspected even before that. Four years ago, I called Elizabeth one morning to talk about the complexities of Medicare. She is six months older than I am and I knew she would have some advice about which program to choose.
Elizabeth said she was enrolled in a Medicare plan, but had no idea which plan or what it cost. “We haven’t seen any bills yet,” she said, “so I don’t know how Medicare is getting its money.” For some of my friends, that might be a typical response, but it’s not what I expected from Elizabeth, who has always been a detail-oriented person with plenty of carefully considered opinions.
Not long after that conversation, Elizabeth and her husband, Michael, visited me in San Francisco. She seemed out of sorts, easily annoyed. When I took Michael aside to ask how to change our plans together to better suit Elizabeth, he said she was just having a bad day.
Over time, her bad days became more frequent.
Waking in the night, Elizabeth would shower, get dressed and be ready to leave the house well before dawn. At a family barbecue, she was uncertain how to turn on the oven to heat garlic bread. Sometimes, she would become angry, far angrier than the circumstances would merit. In conversation with her sisters, she would forget that their children are grown.
Our phone calls changed, too. At first, Elizabeth still talked about family members she had visited or heard from recently, though sometimes her children’s and grandchildren’s names didn’t come to mind easily. Later, even with prompting from Michael, she would lose track of a topic, forget where a sentence was headed and eventually, not be able to complete a thought.
Making a Heartbreaking Decision
Last spring, after Elizabeth fell and required stitches, she spent time in a rehabilitation center. A psychiatrist there evaluated her and told Michael that with the level of dementia as severe as Elizabeth’s, she needed routines and structure to help keep her from experiencing frustration and anxiety.
Reluctantly, Michael and his eldest child agreed to move Elizabeth to a memory care residence, one where residents are well cared for, treated with dignity and valued for who they are now, regardless of whom they used to be.
Michael told me he felt guilty, but he also feared for Elizabeth’s well-being if she lived at home any longer. I told Michael that he did the right thing. I told him that we all say we will never put a loved one with dementia in a memory care residence. Perhaps what we all need to say instead is that we will not put a loved one in memory care until it’s time.
The Alzheimer’s Association estimates that 5.4 million Americans suffer from the disease, which is the sixth leading cause of death in the U.S. Unless a cure is found, by 2050, some 78 million boomers will be at their greatest risk for Alzheimer’s.
“I have tremendous hope that things will change,” said Elizabeth Edgerly, chief program officer for the Northern California and Northern Nevada chapter of the Alzheimer’s Association. She said that she takes heart from current research, which may result in treatments that will delay the progression of Alzheimer’s or postpone it altogether.
Until then, we must be grateful that memory care residences exist, and that trends in care are more enlightened than in the past.
The therapeutic programming manager at a residence in San Francisco told me that though the staff there understands that families mourn, individuals living with Alzheimer’s and other forms of dementia “are gaining the freedom to be happy, to be free of any stigma, to live in the moment. That’s not a bad way to live.”
‘Our Friend Is Still in There’
Soon after Elizabeth was settled, a mutual friend from our college days visited her. In a note, Kathy told me that Elizabeth greeted her warmly and still had her sense of humor. “Our friend is still in there somewhere. I felt like her comprehension was about half when I was with her — it didn’t matter. It was still very special to be in her company,” said Kathy.
Since the day I met Elizabeth in ninth grade, I have enjoyed spending time with her. For over five decades, we have laughed together, cried together and sung Beatles’ songs together. As teens, we spent untold hours together, wondering when our real lives would begin, when we would be happy and worrying whether we would find love. We also promised that when we turned 70, we would sit on a park bench like the “bookends” in that Simon and Garfunkel song.
That won’t happen now.
Michael visits Elizabeth every day, and says she has never asked to go home. He encouraged me to come see her. So, early in September, I did.
She smiled and hugged me tight. The three of us sat together in a comfortable lounge, and Elizabeth was engaged in our conversation part of the time. When she grew restless, we went to see her room and then Michael and I walked Elizabeth to the dining area, where we left her.
“She is safe here,” I said, as we walked to Michael’s car. “I have the overwhelming feeling that Elizabeth is safe.”
What I didn’t say was that I also was acutely aware that I am on the outside, looking in, at Elizabeth’s life, at Michael’s life and at the lives of all who love her as this horrid disease steals her away.
I mourn for all of us.